When my now 37 yr. old son was diagnosed at 10 with C. F. , i started getting the CF Roundtable, or shortly thereafter. It was my only source of information and my only
Connection to anyone with CF. I looked so forward to getting it , so I could learn more about it. I thank you so much for your wonderful news letter. My son will be 38 in November and is in good health. The new medicine he takes has done wonders
My son Bernie will be 35 years old with CF, CF Roundtable has been inspirational, educational and supportive as a parent and caregiver. He is married now three years and had his first baby through IVF. Couldn't have done it without this fantastic newsletter!
CF Roundtable is an excellent publication that serves to better the Cystic Fibrsosis community through inter-patient collaboration, patient testimonials, and keeping the CF community up-to-date on the latest research breakthroughs. It is a strong support system for the CF community. I have experienced this first-hand, as I am a CF patient myself. Thank you to USACFA for providing such a wonderful and vital support system to the CF community! Five stars!
I love being a volunteer for CF Roundtable and connecting more deeply with the CF community by reading about CF experiences through the CF Roundtable newsletter, website and social media. I learn so much and realize how many experiences are similar to mine; I get to collaborate with many others with CF in the community. This is an outstanding organization providing a unique product that helps adults with CF cope with this disease.
CF Roundtable has been a lifeline of information and support for my family and the CF community.
Hoping you continue your good works long after a cure is found!
I have been involved with CF Roundtable for 23 years. I love being involved with this organization. The newsletter provides me and so many others with valuable information and a variety of perspectives on living with CF. The volunteers involved with the group are all committed to helping others with CF and providing a support network through the newsletter and other activities. My life has been enriched by my involvement over the years.
CF Roundtable has been a life saving resource for me and many others. The newsletter started as a resource for adults with CF when there were no other adult focused organizations. I also think parents of children who have CF can also gain a lot by reading the articles in the CF Roundtable.
Now with the addition of a blog CF Roundtable provides up to date information on medical research and up to the minute information on efforts to protect the rights of people with CF.
The CF Roundtable community of readers are interested in learning more about CF and always ready to help others. The articles provide important information that helps people live healthier lives. Reading about others with CF makes me feel stronger and gives me hope for the future. Writers provide information that has resulted in me learning about new ways to deal with CF and the effects it has on my life. I am grateful for the CF Roundtable.
Well, now it has been 29 years that I have volunteered with USACFA and CF Roundtable. I feel that every one of my volunteer moments has been well spent. Since there are no paid employees, all the work is done by volunteers who have CF.
I learn something new about my disease every day because of the articles that our readers submit. When we started this organization in 1990, we knew it could take 20 years to get established and to accomplish our goals...and it has. We now are able to give scholarships to deserving young people who have CF for their vocational or college educations. The newsletter has grown from a dozen pages at the beginning, to 60 pages that are chock full of good info.
I will continue to volunteer here as long as I am able.
It has been my pleasure to volunteer with USACFA and CF Roundtable for 28 years. This group puts every cent that it receives into production of the only newsletter that is just for adults who have CF in the U.S.A. and into sharing information and resources with those adults. There are no paid employees of the organization. One hundred percent of your donation goes to the stated goals of the organization. I have CF and I find the newsletter invaluable.
CF Roundtable is a non-profit run completely by volunteers with cystic fibrosis. The newsletter brings together those with CF to discuss, support and learn - with the ultimate goal of enhancing the lives of those with CF.
I have been reading CF Roundtable since 1998. I am so grateful for the connection to the CF community and information regarding the illness.
I love volunteering for this nonprofit, I always feel like I'm contributing something important.
CF Roundtable was one of the first places I was able to find support for and information about living with CF following my late diagnosis. Each issue and every page of the newsletter was read as soon as it arrived in my home. The wisdom and experiences of others was valuable support in my learning about living with CF.
CF Roundtable was the first source of information about living with CF as an adult that I found after being diagnosed 13 years ago. I had so much to learn. Having the resources of CF Roundtable together with my CF care team has made my introduction to CF a little easier and definitely richer.
CF Roundtable is just wonderful!
The stories and articles really hit home and are so relevant to our life as my spouse has CF.
I am often quite touched by the experiences that are expressed in this top notch publication.
Thank you CF Roundtable
USACFA is the greatest disseminator of information for adults with Cf. The stories are real and recognize aspects of CF that are often ignored. I am so thankful for USACFA’s commitment to being such a wonderful resource for the CF community!
I look forward to reading the CF Roundtable every three months, and not just because my cousin, Kathy Russell, is the Managing Editor! The articles are informative, poignant, funny...sometimes all at once. It does give me more insight into Kathy's world. I sometimes share CF Roundtable with parents of CF children who are unfamiliar with the publication. CF Round Table provides a sense of community and hope. I am grateful for all of the hard work that goes in to it, and for the organization it represents.
I heartily second everything Laurie W, my sister, has just written in her review! The CF Roundtable is compelling reading and a gift that keeps us informed and connected to the wonderful CF community.
A very hard-working group of volunteers produces this excellent newsletter.
I was invited to be a director for USACFA from the now Vice President, during a difficult time in my life when I came to the realization I could no longer pursue a full-time career due to my health. USACFA has allowed me to find my passion for connecting and helping others in the CF community. I have met so many amazing fellow CF fighters through this organization. I can't say enough good things.
USACFA (CF Roundtable) is an amazing organization that I have become a part of in the past year. Fellow directors are some of the most dedicated, inspirational, driven, and intelligent people with CF I know. This publication has allowed me to share personal experiences and struggles of living with CF as well as learning an incredible amount from reading other's stories as well finding out about new research on the horizon for CF patients. USACFA and CF Roundtable has helped me connect to the CF community in a way I never thought I could and I am so thankful and delighted to be a part of this organization!
CF Roundtable is a non-profit run completely by volunteers with cystic fibrosis. The newsletter brings together those with CF to discuss, support and learn - with the ultimate goal of enhancing the lives of those with CF.
CF Roundtable Newsletter is filled with invaluable information. It has taught me so much over the years. The articles serve as an educational resource and as a source of support. The articles, all written by adults with CF, address the physical and emotional challenges of living with CF.
I cannot say enough good things about not only benefiting from the CF Roundtable, but also being involved as a volunteer. Before I became a Director, I enjoyed what USACFA offered the Cystic Fibrosis community. They are staple and have led the way for other organizations in terms of information and creating unity. As a Director, I have felt nothing but support, have been given all of the necessary tools to succeed, and have felt a great sense of pride being able to contribute in the best way that I can. The organization as a whole is so passionate about what they are doing that it is easy to find the motivation to be as involved as possible.
I love reading CF Roundtable. When the newsletter arrives in the mail I stop what I am doing and read it cover to cover. Blog posts are also very informative. CF Roundtable is a treasure. I learn si much from each article.
I have been reading CF Roundtable for many years and I'm proud to serve as a board member for the organization. The newsletter, blogs, and social media presence are such a great resource for all of us with cystic fibrosis. It's free and easy to sign up.
I started reading CF Roundtable several years ago. I'm now proud to serve as a board member for the organization. The newsletter, blogs, and social media presence are such a great resource for all of us with cystic fibrosis.
The great thing about the CF Roundtable is that it keeps evolving. The publication continues to provide very insightful and timely information by and for those with Cystic Fibrosis. Published quarterly, each issue has a focus topic theme in addition to regular columns like Ask the Attorney, Speeding Past 50 and Information from the Internet. Where the organization has grown has been in adapting to reach out further into the community. Originally mailed to subscribers only through the US Mail, the CF Roundtable is now available for download along with past issues and several blogs are published via email each week. It is a great way to stay connected. Finally, the organization which publishes the CF Roundtable now offers scholarships to students with CF proving their commitment to further strengthening the CF community.
The CF Roundtable is a fantastic publication. As an adult with CF, I look forward to receiving my free quarterly issue by US mail and by email. It's rare to find a newsletter that connects on so many levels but the CF Roundtable consistently does just that. It addresses issues that I have dealt with or most likely need to plan on dealing with in the future. Every page provides insights and perspectives from a CF adult, family member or caregiver. It's inspirational, educational and sometimes funny. And the best part is that when I find it appropriate, I can share my story with the greater CF community, get published and feel like I'm really making a difference. The CF Roundtable has also been a valuable tool for my wife to learn about aspects of CF that she might not normally be exposed to. Thank you Roundtable for bringing the CF family together.
I've been reading the CF Roundtable, published by USACFA, throughout my adulthood (I think I received my first newsletter in college, I've been in my professional career over fifteen years) -and always learned something from it. The content is a balance of practical work/life and up to date treatment information relevant to the cystic fibrosis community. The outreach over the years has only grown and expanded - through social media and other outlets to continue to offer content accessible, and free, to both subscribers and the public in whatever format they opt. With so much going on in the adult CF community, it is great to have the CF Roundtable put everything together in one place.
USACFA has made a difference in so many lives of those living with CF over the years. I began reading the newsletter about 15 years ago and I always learn something new. Besides informing their readers of clinical advancements and clinical trials, they also address the emotional impact of CF. So often this aspect of CF gets overlooked. Reading articles written by adults with CF who have walked the same path as you provides support that is so difficult to come by in a rare disease community, especially given the isolating effects of strict infection control policies. I'm so proud to be a part of this organization!
As a volunteer for the US Adult CF Assn and an avid reader of their newsletter, Cf Roundtable, I feel they offer the CF community support, inspiration and an environment to share experiences. Living with cystic fibrosis can be isolating and lonely but being part of this organization helps me feel part of a big family who cares. I am happy to see them grow and gather more readers who then become writers.
USACFA (publisher of CF Roundtable) has always been a beacon of advocacy in the CF community. Their publication covers many avenues of living with CF, and always offers a well-organized, thought-provoking, and optimistic tone for the reader. So thankful for all that they do, and I'm honored to work with such a passionate group of people.
As an adult with cystic fibrosis, CF can be an isolating disease. CF patients are not allowed physical contact with each other and the CF Roundtable provides a critical outlet for patients where we can connect and share experiences and knowledge. The publication is diverse and addresses a wide variety of issues within the CF community, including social and financial challenges, seeking higher education, working, traveling and clinical innovations. There really is no comparable publication in the CF community!
I have been reading CF Roundtable for many years and am proud to now be a part of the organization. It is a great resource for those with CF to learn about studies and exciting news in the CF world. But it is also a great way to connect with other CF adults and their stories, via the quarterly newsletter and online on the CFR blog. I highly recommend this organization for anyone with CF.
CF Roundtable, produced by USACFA, is an invaluable resource for anyone dealing with CF, whether it be patient, caregiver, or medical professional. CF Roundtable provides first hand accounts of what it’s like to actually live with CF and is also a fine source of information and research. CF Roundtable is inspirational, to say the least, as are the volunteers who produce it.
CF Roundtable is one of the most valuable resources currently available for adults with CF as well as caregivers of those with CF. It provides a unique perspective of living with the disease as well as practical information and research. Given the fact that it is produced by volunteers who all have CF makes it particularly remarkable. Kudos to those who do such a fine job of keeping the CF community so well-informed and so connected.
As a 52 year old with, I have been reading, enjoying and benefiting from the roundtable for about a year. It is an important resource for people with CF, parents and family members, providing information about scientific developments in easy to understand language. Thanks to all the people working on this.
As a 49 yo CFer, I have been reading, enjoying and benefiting from the Roundtable since its inception many moons ago. It is an important resource for people with CF, parents and family members, providing information about scientific developments in real-speak, a column highlighting studies and news related to CF, ideas and stories written by USACFA members and guest writers on how not only to live with CF, but thrive. It has done a great job keeping up with the exciting and dramatic developments in medication and treatments. Roundtable is a critical tool for a small community, bringing us together and keeping us informed, inspired and hopeful. A treasure kept alive by incredibly dedicated people for whom I am very thankful!
The CF Roundtable provides a very informative newsletter for those with cystic fibrosis. I have learned a lot from it. It also has very good blog posts about important news that comes up in between newsletters. It brings a sense of community to those with CF as well as understanding to the many complexities of this challenging disease.
Awesome organization! Community sourced information that is important for all members of the community. Special focus on adults living with CF. Would highly recommend this organization to anyone looking to stay up on all aspects of cystic fibrosis, science, social and more.
My wonderful wife has CF and USACFA (and the CF Roundtable) are an invaluable source of information that helps to keep me up-to-date on the latest CF news but also serves as a space of inspiration and reflection with every issue. Thank you to the USACFA team and all of the incredible CFers out there. You're the best!
I have been a board director for USACFA since 2013. Prior to joining USACFA I was a long-time reader of CF Roundtable, which is published by USACFA. The board directors are dedicated to educating, empowering and sharing valuable information with the CF community. I am honored to be part of this organization!
USACFA is an excellent non-profit organization serving adults living with Cystic Fibrosis. CF Roundtable is a useful and relevant source for information pertaining to CF including patient experiences and clinical trials.
This is a great source of support fr those who have cf and their families.
The US Adult CF Assn (USACFA) is an excellent organization that I have been proud to be part for 7 years. CF Roundtable and the accompanying website are tremendous support for me and, I believe, for the CF community. I'm able to meet others with CF through the CF Roundtable social media sites, share our stories, learn from each other and laugh too.
The newsletter is engaging and chockfull of information on all aspects of CF. I look forward to its arrival in my mailbox. I encourage any adult with CF to subscribe to it!
CF Roundtable is fabulous source of support for me, my husband and family. The articles are so informative and inspiring such as Beth's legal and Laura's research updates, Isa's spirituality, Julie's Wellness and Kathy's getting older columns. The focus topics often leave me chuckling, commiserating, awed or taking notes depending on the topic. I read it cover-to-cover as do members of my family. We feel great after reading from the validation that there is world out there that understands!
As the publishers of CF Roundtable newsletter, the US Adult Cystic Fibrosis Association provides an important source of connection, information, and support to an often isolated and small orphan disease population. USACFA is run by adults with CF, for adults with CF and their care-partners and families. I was honored to join the Board of this organization last year after several years of readership and contribution.
I have been reading CFR for a while and love the mission. It is great to have a publication that is written by and for people with CF. We just "get" each other.
I have the honor and privilege of serving on the board of USACFA. I've read the newsletter CF Roundtable since the 90s. It has always been such a great source of inspiration and information.
CF Roundtable is a great publication published by USACFA. In addition they have great information posted on their website and their Facebook page. USACFA provides useful information for the health of both the mind and body.
Roundtable is a wonderful resourse for support, information, sense of community and hope for all those coping with CF.
Super informative for non CF persons, and also for persons with CF.
As husband to someone with CF, the CF Roundtable gives good info and support to me. I read every issue, cover to cover. Excellent.
This publication has been a wonderful source of information and support for me for over 2 decades!
USACFA’s publication CF Roundtable has been one of my major sources for information about Cystic Fibrosis for the past 10 years. It was first introduced to me by my CF Center and I’ve been a subscriber ever since.
Each issue is eagerly anticipated. Upon its receipt, it is immediately skimmed. Then, during the next two weeks it is read in detail.
While almost all of each issue is of interest, I especially like the regular “Ask The Attorney”, “Speeding Past 50”, and “Information From The Internet” articles. As a 73 year old with CF, seeing the increasing ages of people in the "Milestones" section has been very encouraging.
I was honored to become involved as a volunteer with the US Adult CF Association (USACFA) 6 years ago. Before that I was an avid reader (and still am) of USACFA's outstanding newsletter, CF Roundtable, due its wonderful support, education and resources in all things CF. As a volunteer I was able to witness how the directors are constantly striving to improve the publication. It became free to anyone who wants it 3 years ago and at the same time the website was revamped to offer online editions of the newsletter and more interaction between subscribers. USACFA is a quality group of devoted volunteers, all adults with CF.
CF Roundtable is an incredibly valuable source of information, particularly for the adult Cystic Fibrosis community of which I'm a part. The newsletter addresses nearly every aspect of living with Cystic Fibrosis, masterfully weaving in topics ranging from clinical trials and preclinical research to travel tips, legal information and everything in between. There aren't any other sources of such rich, varied and consistently high quality content for the adult CF community. I look forward to receiving the CF Roundtable in my inbox and I heavily rely on it as a source of trusted and useful information. CF Roundtable is a huge asset to the CF community!
The CF round table is a excellent newsletter for the CF community. Sharing feelings and ideas are so beneficial to the community. It helps families not to feel alone in the fight that we have all encountered. Keep up the good work!
The CF Roundtable is a great magazine. It helps the CF community to share their experiences and help others to feel that they are not alone in this fight. The articles are filled with heart warming stories which helps everyone to understand the battle that these people go thru on a daily basis. It gives great information for people with this disease and others that are not familiar with the disease. We need to get the word out to more people in order to make others aware of what CF is all about. Good work by all!
I am a young adult who enjoys reading CF Roundtable. The stories are real and help me continue to learn about this disease. I am given insight into potemtial issues and struggles but also gives me hope to see the older population continue to grow. Aside from the stories, there is legal advice and medical updates. Its a mini one stop summary of things new in the CF world. The magazine ties me to the CF community without actually knowing these people and I know I'm not alone in this battle. I absolutely love it and would reccommend it to anyone fighting CF or their caregivers.
As a 34 year old Cystic Fibrosis patient, I value the information in the CF Roundtable! In fact, I have wrote and been published in it! What a great resource it is for us living day in and day out with this disease. This publication touches on subjects that we all deal with from insurance issues, to exercise, to new findings that come about in medical research. The staff is made up of those with CF, which to me makes it more credible (after all, you don't truly know our struggles unless you live a day in the life..). It is wonderful to be able to receive this publication as a free service to me and so many others. THANK YOU!!!!
CF Roundtable is a great publication. I am a 36 year old approaching the decision of a possible transplant. I have read great encouraging articles on so many different topics. It really puts into perspective that there are other people out there in your shoes. Life with CF can get discouraging - as hard as you try to keep yourself healthy and feeling good, that can change at the drop of a hat. Each time I read an edition, it gives me a little ray of hope that everything will be ok. Thanks for all of the great information!
I am a 57 year old with CF and have found the CF Roundtable enormously helpful; I hadn't known about it (or realized there was such a great resource for CF adults) until the CF Clinic I go to told me about it a few years ago. From time management to issues with CFRD and the legal and medical issues columns...just knowing there a community of support out there is greatly comforting. What a wonderful group of people who devote their time to giving to the CF community!
Superb group, with a wide array of CF info ranging from anecdotal tales to detailed research and recruitment for clinical trials. Thanks to USACFA and CF Roundtable, I'm more up on what's happening than my son's CF docs. I often share CF Roundtable info with my son's CF docs that they've not yet heard about. Love y'all, keep up the good work, and thank you.
The CF Roundtable has been helpful and a beacon of hope for us since our son was diagnosed at age 2. The practical advice and experiences have kept us on track with his care and he is doing very well at age 22! Thank you to CF Roundtable!
The CF Roundtable is a valuable source of practical information for families with CF. The insurance column by Beth Sufian is a must see every time. Our 21 year old son is in college and we are guided by the advice. The articles by adults with CF helps our son to get a better perspective on his life and his future.
This is a very important part of dealing with CF.
As the parent of two young adults with Cystic Fibrosis, the USACFA provides the adult community (of what is said to be a childhood illness) with numerous resources for which we are grateful. They are one of only a few that meet the direct needs of adults living with CF.
I look forward to getting the newsletters and reading up on the latest drug therapies and other information happening in the CF world. They do a great job not only keeping us informed but providing hope, cheer and peace.
They do a great providing information and support to adults living with this challenging disease.! I recommendit to all the patients I serve!
MY SON HAS CYSTIC FIBROSIS & WE LIVE IN A RURAL COMMUNITY. THIS NEWS LETTER KEEPS US UP TO DATE ON ALL THE NEW THINGS HAPPENING WITH CF. THE NEWSLETTER GIVES ME HOPE AS A MOTHER THAT MY SON IS JUST LIKE ANY OTHER CF PATIENT. VERY HELPFUL & RESOURCEFUL INFORMATION.
My son is a 14 year old boy with Cystic Fibrosis. CF Roundtable not only gives up to date medical information, but also help on how others are learning to live their lives while battling this disease. It's educational and also inspiring. They do a great job of funneling down all the massive amount of information and studies being completed into concise explanations and show how things can help our lives individually. LOVE my CF Roundtable!
I appreciate the knowledge and helpfulness they have to offer. I'm constantly trying to stay on top of the latest advancements in the fight for a cure for cystic fibrosis.
I am 32 years old with Cystic Fibrosis. I have received CF Roundtable for many years. CF Roundtable has given me in sight on medical & personal problems related to this disease. I find comfort & hope when I see other people with CF that are older than me in the newsletter. I look forward to getting CF Roundtable to see the developments with the medicines to help future generations. I enjoy the questions you can ask the lawyer because insurances can be very confusing. My husband, who is a nurse, enjoys reading CF Roundtable. It helps us both understand more about my disease through others perspective. Sometimes the articles give information about things that I am too afraid to ask or never thought about. Which helps me bring it up with my doctors. I plan on receiving CF Roundtable for many more years to come.
I am a 35 yr old CF mother of 2. My health is of utmost importance but taking the time to find all of the info that comes to me through the Roundtable just isn't possible. Reading the articles gives me hope....whether I needed at that moment or not. I will conticontinue to read and shate this site with many.
My son has Cystic Fibrosis and the CF Round table newsletter keeps us informed on anything new happening with all research and any new medications. It also has many articles about people living with CF and how they deal with many issues from insurance,mental health,hospitalization just to name a few. I highly recommend this non profit.
I have been a USACFA board member since 2001, and have written at least a dozen articles from 1997 through last year in CF Roundtable. The reason this organization was formed was for support of adults with CF. When it first started, only about 30 percent of CF patients were considered adults(over 18), and now the number is closer to 51%. This certainly cannot be contributed to CF Roundtable, but it is great to know that over half the CF population has this newsletter as a resource for them. I have personally learned much from this newsletter, and found many new faces and friends in the national CF community. They continue to be resources for me, and I will continue to support USACFA for as long as I am able.
CF Roundtable has always been a strong support mechanism for me. It allows me to see what others in the CF community experience in good times and bad. I usually read the newsletter cover to cover and learn new things from what others do. CF Roundtable is also a good resource for new therapies in the pipeline as well as ideas in dealing with CF.
When I first heard about this newsletter 20 years ago, I had been looking for support and finding none. When I got my first issue of Cf Roundtable, I felt connected and less isolated. I usually read the newsletter cover to cover and sometimes a couple of times while waiting for the next issue. It gave me hope to read of others who were living longer and healthier lives with CF. It also allowed me to see how others with the same disease coped with their various trials and tribulations. I could relate to these people who wrote articles and became familiar with those who wrote often.
It is 20 years later and I find myself volunteering for the newsletter and still enjoy the articles from those who share their stories to offer support to alert others to a certain situation that can occur, for instance, after lung transplant or with CF-related diabetes or chronic prednisone use. I still find this newsletter and organization a useful in living with CF.
This year has been exceptional for the USACFA as they are now offering the newsletter for free to everyone and people are respondng very positively by subscribing in large numbers. It is an honor to be part of this organization and hopefully to be part of it for many more years.